An intimate view into what it is to be a girl, then a woman, living with Asperger's Syndrome. How do you understand the rest of the world? How do you make the rest of the world understand you?

Sunday, 19 September 2010

Concerns regarding the DSM-V

I thought I should write about my concerns regarding the DSM-V revision.

I am not referring so much to the revision of the classification of Autism Spectrum Disorders, but rather that of personality disroders and how this may adversely affect undiagnosed people (particularly females) on the autism spectrum.

It is already apparent from many discussions that many of us women on the spectrum have been through misdiagnoses prior to receiving our correct spectrum diagnosis. Many of these errors have simply been through a lack of education of psychiatrists and medical professionals in recognising ASDs.

I was reading through the general diagnostic criteria for PDs for the DSM-V and held concerns that if a psychiatrist was unable to recognise where certain difficiculties came from for an ASD women that they would be most likely given a PD diagnosis (of some kind) and not an ASD diagnosis. I will explain further in a second. But I must say, I think the risk is substantial given that most psychiatrists brush over the ASD part of their leaning with the opinion "I don't need to know much about that because it's not a mental illness and other people deal with that". Quite contrare, I believe they should be highly aware of how ASDs can present because if they don't recognise it they risk mislabelling and treating those on the spectrum as mentally ill (or flawed in personality/character).

Definition: Personality disorders represent the failure to develop a sense of self-identity and the capacity for interpersonal functioning that are adaptive in the context of the individual’s cultural norms and expectations.

[Now this is something where many people on the spectrum, especially women, would be identified... Many psychiatrists will focus more on the interpersonal functioning (difficult for most on the spectrum due to the different way we think and process things) because it is much harder for them to assess 'sense of self-identity'.]

A. Adaptive failure is manifested in one or both of the following areas:

1. Impaired sense of self-identity as evidenced by one or more of the following:

[I find it quite disturbing that I can find a way any ASD individual could be mistaken as having all three of these behaviours! Take note - psychiatrists look for mental illness FIRST, and mayonly recognise the very severe end of the spectrum associated with intellectual disability and severe language disorder]

i. Identity integration. Poorly integrated sense of self or identity (e.g., limited sense of personal unity and continuity; experiences shifting self-states; believes that the self presented to the world is a façade)

[Plenty of women on the spectrum report the 'self presented to the world is a facade', this isn't due to a PD in our case, but rather to the fact we have learnt to 'fake it' to an extent to avoid criticism and judgement of our little quirks, differences and difficulties: I have no doubts without a lot of 'faking it' when it comes to fitting in I never would have gotten through my own medical degree - and people still thought I was weird even with the work I put into 'pretending to be normal'.]

[Actions of some women on the spectrum may be viewed as having 'poorly delineated interpersonal boundaries'; however with those on the spectrum it is more due to not being able to read or understand the social situation or the other person that leads to this rather than either disregard for the social norm, or believing they are above thesocial norm. Also, given the ability of females on the spectrum to mimick those around as a strategy to fit in with those around, it could easily be said women on the specturm meet the criteria 'definition of the self changes with social context': Because for the uninitiated psychiatrist who simply doesn't understand this is how we appear less weird, they just observe that we might be different depending on context and attribute it to a PD.]

[It would be easy for people to see the difficulties some spectrumites have with executive functioning as having low- self-directedness; what seems like basic common sense and is easy for many NTs simply isn't for us... Of course without knowing our disability many people would point at certian things spectrumites do and say we have low self-directedness. Also the extra challenges we face in achieving our goals may throw us into the boat of being labelled 'unable to set and attain satisfying and rewarding personal goals'. I can think of many ladies on the spectrum who 'appear' to lack direction, not because they do, but because there are so many other things distracting them or making life difficult. Of course then we need to consider women who don't have a diagnosis and have become depressed not understanding why things are so hard for them - I can imagine a depressed Aspie may well appear to lack purpose to life if they simply get to the point where it's all too hard]

2. Failure to develop effective interpersonal functioning as manifested by one or more of the following:

[Well, for ASD individuals without training, skills, or the ability to fake it, I think nearly all of us at some point HAVE to exhibit this. Inherent in our disability is a difficulty with social integration and social interactions!!! And our subtle communication difficulties at the higher functioning end of the spectrum certainly set us up to look like we know what we're on about when we really aren't sure...]

i. Empathy. Impaired empathic and reflective capacity (e.g., finds it difficult to understand the mental states of others)

[Plenty of people on the spectrum find it difficult to understand the mental states of others - but that is due to our ASD not a PD]

ii. Intimacy. Impaired capacity for close relationships (e.g., unable to establish or maintain closeness and intimacy; inability to function as an effective attachment figure; inability to establish and maintain friendships)

[Many things I could say about this, but we have a different style of relationship. Wendy Lawson's book "Friendships: The Aspie Way" comes to mind. We may not engage in relationships the way the NT population expect, but that doesn't mean we have a PD. Due to our difficulties reading and understanding people we have an inherent difficulty establishing and maintaining friendships - more so with the NT population though... This point is frought with risks for the ASD individual. Basically if the psychaitrist doesn't recognise that it comes from a lack of understanding and subsequent anxiety, then they'll be ticking this box]

[some ASD social blunders can certainly come accross this way! But it's not because we know and choose to things that way - half the time we don't even know that something we did could be seen as unacceptable]

[The ASD concrete thinking style could certianly lend itself to this in many individuals]

B. Adaptive failure is associated with extreme levels of one or more personality traits.

[So if we have a meltdown under stress, or if our aspie traits are accentuated under stress we would display 'extreme levels of one or more personality traits' if others dont' recognise that it is part of being on the spectrum]

C. Adaptive failure is relatively stable across time and consistent across situations with an onset that can be traced back at least to adolescence.

[Well. What can I say. ASDs don't go away, but once we know what the problem is we have the opportunity to learn new skills... A lot of people start showing difficulties in adolescence because that is when the social stuff exceeds our autistic capabilities - social situations and expectations change around that age and we're usually still mastering the younger years. Girls in particular may not show up until adolescence because of our ability to mimick... So I think if someone hasn't been diagnosed and is presenting for some reason - eg. depression - then it would appear they have had longstanding difficulties and that it's probably comsistent]

D. Adaptive failure is not solely explained as a manifestation or consequence of another mental disorder

[Now this point is about the only saving grace in the whole lot... Unfortunately for those not already diagnosed it is of little benefit when most doctors fail to recognise ASDs in women and high functioning individuals! So are all of those undiagnosed people who accidentally see psychiatrists and medicos who are not aware of the Autism Spectrum doomed to misdiagnosis as PD patients - unfortunately I think the answer is quite possibly yes, and even more so before this revision to the DSM was made! We need to educate psychaitrists and doctors more about ASDs]

E. Adaptive failure is not solely due to the direct physiological effects of a substance (e.g., a drug of abuse, medication) or a general medical condition (e.g., severe head trauma)

[Yes. Well most of us won't be able to claim all out difficulties were due to substance use etc... This is basically so those who rock up to doctors all dopped up etc don't end up with a label for no reason - Also, my undiplomatic side personally thinks they probably need a label more than some other people so they get help and stop abusing their bodies...]

So there are my thoughts and concerns. I actually find it far more concerning than the revision of ASDs in the DSM for the sheer reason that as it is, doctors aren't learning more than 5 minutes on ASDs in medical school (or post-graduate psychiatry training. And if theydon't learn about it how can they recognise that the difficulties decribed above may actually be due to a developmental disorder and not due to a personality disorder. In contrast they learn much much more about personality disorders: Unfortunately some of that unoffficial teaching is "if the patient is hard to get along with then they probably have a personality disorder, so feel free to label them"... [ASD individuals can be difficult to get on with at times if you don't understand the spectrum or the fact they are on the spectrum!]

I would love to raise this with a committee, because I think the issue is huge (more so for the women who are already going undiagnosed than the men), but I'm not sure who you raise something this big with...

2 comments:

Ive been trying to get my daughter diagnosed, but so far they insist it is social phobia and depression. My oldest daughter is classic Aspergers and escaped the diagnosis when she was diagnosed with epilepsy in 1989. The medical personnel are so fixed in their ideas about autism that we are having no success. They way I found the Aspergers was working from what I knew about epilepsy and auditory processing delay and short term memory problems in my oldest daughter. Even though I now know what's different about myself and my two daughters, I'm really stuck in trying to help the youngest who has all but given up hope of things changing. I really enjoy your blog and I need to start trying to change myself in a way that my daughter will pick up and want to emulate. Where should I start? (I don't worry about being rejected anymore, I just find living with my daughter very stressful because she blames me for everything.) She has not had a friend in about eight years.

In terms of getting a diagnosis, most States in Australia have an Autism Association that you can arrange assessments through (and they also usually have a list of people who also do private assessments).I've found that allied health professionals seem to know more about ASDs, and are generally much better at recognising them, than the medical profession. When I wanted an assessment (after scoring unbelievably high on the AQ Test) I arrange several assessments with psychologists and a speech pathologist. All 3 were registered with my state's Autism Association. In terms of where to start... I found once I developed a better understanding of myself, my emotions and social situations (using the Rubik's Cube as a model, but also practising lots with friends and psychologists) that I didn't have to think so much about 'changing' but it just started happening. By no means am I perfect or has my autism been 'cured', but my frequency, intensity and disruptiveness of meltdowns has hit a life-long low; my ability to deal with difficult things has reached a similar all time high; and my confidence is more solid (not quite as much of a facade as before I had this increased self awareness). I found working through Tony Attwood's books on Exploring Feelings was amazingly helpful. I also used the CAT-kit and it's priciples in learning more about my emotions and how to identify them at different levels. There are also other workbooks out there (some of which I have used, and most of which are for teenagers or kids) that I found very helpful in increasing my self-awareness. If you daugter has a special interest I would suggest getting her involved in an activity related to it and encouraging friendships in that setting. As she learns to improve social skills the others are more likely to integrate with her despite any social errors if they have a shared interest (that's kindof what it's like for me working in pharmacology...)So yes, I would suggest contacting your local Autism Association. Keep in mind that doctors are NOT the 'be all and end all' (include some allied health professionals - the doctors will eventually follow suit). And in general, don't beat yourself up over your daughter blaming you for everything (I did that to my mum for the first 26 years of my life: And I turn 27 in just a few days!)